A three year old girl named Amelia has Wolf-Hirschhorn syndrome. She also needs a kidney transplant. Her mother claims that a doctor has denied her daughter’s transplant specifically because her daughter is developmentally delayed. This has created a ton of controversy across the internet.
Chrissy Rivera is a mother of three children. She has two sons who are healthy. She also has a three year old daughter, named Amelia, who has Wolf-Hirschhorn syndrome. This is a chromosomal disorder that is caused by a partial deletion of the short arm of chromosome 4. It is something that an infant is born with.
Children who have this disorder tend to have wide spaced eyes, a broad nose, and oral facial clefts. (This could take the form of a cleft lip or cleft palate). They can also have small, or asymmetrically shaped heads, heart defects, and seizures. Children with Wolf-Hirschhorn syndrome will have profound developmental and intellectual delays.
Amelia also needs a kidney transplant. I have no idea if this is due to her Wolf-Hirschhorn syndrome, or if it due to something entirely separate from it. Her family has been very involved in the process that one must go through in order to receive a kidney transplant. They have been working with the Children’s Hospital of Philadelphia.
Chrissy Rivera wrote a very passionate post on her personal blog where she describes what happened during a meeting with the doctor who was involved in the decision making process regarding her daughter’s need for a kidney transplant. The doctor denied her daughter’s kidney transplant.
In short, she has made the claim that the doctor said that Amelia was not going to be put on the transplant list because she was “mentally retarded”. She says that the doctor used that exact wording. Chrissy Rivera went on to say that the doctor expressed concerns about Amelia’s ability to take the necessary medications that she would need to, for the rest of her life, after a kidney transplant.
The blog post has traveled around the internet, and someone has created an online petition demanding that the hospital give Amelia the kidney transplant that she needs. From what I have read, it seems that Amelia’s family is intending on using a live donor, from within her family, to help Amelia. This can only mean that the family wants to use another child as a kidney donor. The discussion about the ethical issues that come from that type of situation can go on forever.
The Children’s Hospital of Philadelphia has made a statement about this controversy. In short, they note that they cannot speak about the specific details of an individual case, because of confidentiality. They have stated that they do not disqualify potential candidates on the basis of intellectual abilities. It seems that there will be another meeting between the family and the hospital.
Image by Spectacles on Flickr